Recently Diagnosed

[sunshine-happy]

My husband (70yrs) has just been diagnosed with CLL, (Nov 24) visiting the support site in order to gain as much knowledge as possible. Very interested in finding out about diet and exercise, in particularly if there is any advice as to changes we could make to boost immunity. He has always been very fit and healthy.

[BigfootT]

sunshine-happy, I wish you weren't joining us, but welcome to a great club of worldwide CLL patients. Like your husband many, if not most of us, were diagnosed while living our happy, healthy lives. The first few months are a bit mentally challenging, but it does get better as we settle in to our new reality and life still is good. I personally am coming up on my first anniversary of diagnosis and am approaching my first line of therapy, but still feel perfectly normal, but for a a few swollen node reminders that I'm not.

Learn as much as you can. Stay informed on new treatment options and by all means find a CLL specialist at a good cancer center. The field of treatment is changing so fast they are the only ones who can keep up.

All the best, Bigfoot

[sunshine-happy in reply to BigfootT]

Thank you.

[lankisterguy Volunteer]

Hi sunshine-happy,

As  BigfootT says, we are sorry your husband has had to join our group, and you are asking some of the appropriate questions.

Here is a link to 766 past posts that mention exercise:

healthunlocked.com/cllsuppo...

And 733 that mention diet: healthunlocked.com/cllsuppo...

>

I think you will find that neither will have a direct proven effect on immunity, but we do find that they are proven to extend life spans by helping us survive infections and other comobidities like heart & lung issues, that are often more threats to us than CLL.

>

Len

[Panz]

You will receive lots of very good advice from our caring community. I welcome you and your husband and as all ready been said it is rather tough at first but you will begin to adjust as you learn more. I will give you the advice my original doctor who diagnosed me. He said to just continue living your life as you won’t die from the Leukemia you have you will die with it as there is no cure and that was going on 36 years ago. He said the best thing I could do to help myself was to get all of my vaccines updated ASAP and have my husband do the same. I am on my third line treatment and haven’t felt better…..life is great. I do receive IVIG every 4 weeks as I have very little immune system of my own and that keeps me in a very safe place. My husband has recently been diagnosed with Parkinson’s and Vascular Dementia and everyday is learning to play the hand we have been dealt and life is indeed very special! All the very very best to you and your husband. You can do this!!!

Panz 🙏😊💕🍀👍

[sunshine-happy in reply to Panz]

Thank you so much. Wishing you both much happiness and sunshine.

[GRMat158]

Hi,

You have already received good replies from a few of our community. I would just add a few words to those.

Besides accepting all the good advice - don't lose sight of the fact that your husband's journey will be unique - each of us reacts in different ways, physically, emotionally, psychologically to what is happening and the illness itself is unpredictable in how it will affect him. You will find others who match in some ways, but probably not anyone who has exactly the same experiences as your husband will experience. This also applies to the care you receive - the resources available to you locally, be it GP, hospital or specialist will vary depending on where you live.

I was fortunate that when I was diagnosed (in 2013) my GP immediately recognised the symptoms and at my local hospital, just about a mile from where I lived, there was an active CLL specialist who became my consultant. I have no doubt that helped in my own particular journey.

Speaking now from a personal point of view, I don't think I have made any changes to my diet due to CLL - although there have been some related to the drugs. As far as exercise goes, I don't think that CLL has (in itself) changed things for me - certainly not as much as just getting older has changed things 😂.

Most of the changes to my lifestyle have resulted from the fact that having CLL has changed my risk outlook with regard to infections - especially post-covid. There is no doubt that I am now more risk averse than I was previously and, so far, that approach has worked well.

Your husband's journey path is yet to be discovered, but I wish you both all the best,

George

[sunshine-happy in reply to GRMat158]

Thank you George. I feel all the messages I receive are very encouraging, pleased to hear your journey is going well and hasn't altered your life in too many ways. Covid made us far more risk aware and you were already well informed when the Covid years hit.

Thank you.

[ncosto]

Sunshine-happy I will add my personal experiences. I too was a very active, physically fit person working out on a regular basis, a walker, hiker and skier. I felt good after my initial diagnosis with a W & W treatment. However, when I started treatment, my energy levels declined dramatically and I have been unable to work out, or even take walks for 4 months. The doctors seem to feel that the adjustment to my treatment will level off within the first 6 months and I may get my mojo back. I have not undertaken any special food approach as I was a pretty healthy eater before my diagnosis and with the isolation I've experienced, I have felt that food deprivation would only make my anxiety worse. I think we all know that eating well and exercising make us healthier (with or without CLL), so I guess we should all strive to achieve both. My advice to you and your husband, is patience while you find your way on this journey

[BigDee]

Hello sunshine-happy

Best solution is to eat balanced diet, moderate exercise and stay away from people who are coughing. Blessings.

[sunshine-happy in reply to BigDee]

Thank you....

[Ellieoak]

just tell him to stay on a Mediterranean type diet. And keep fit. Tell him to go to CLLsociety.org and they will put him on a support group near his home. I have had CLL for 24 yrs. I’ve had 5 treatments over the past years. I’m still going strong.

[sunshine-happy in reply to Ellieoak]

Ahhh that's so good to hear. Well done you. Thank you for the advice.

[Fowey2009]

So sorry you have had to join this group. However it is a very supportive forum, and the admins are very knowledgable and helpful.

When my husband was diagnosed, the most important thing I learnt was to disregard anything on the internet that is more than 2 years old ( blood cancer treatments are moving on rapidly) and always check the reliability of any ‘evidence’.

I wish you all the best on your journey.

Beryl

[sunshine-happy]

thank you for your reply, will take your advice.